Iain tells of struggle to access MS medicines

Iain was diagnosed with relapsing remitting Multiple Sclerosis (MS) in 2005, aged just 37. He is one of more than 4,000 people living with multiple sclerosis in Northern Ireland.

There is no cure for MS and Northern Ireland has one of the highest rates of MS in the world and the highest incidence of male MS in the UK.

Iain is backing the Treat Me Right Campaign this MS Week as he personally has found it a struggle to access the treatment he needs.

“I was diagnosed in early 2005. I’d be experiencing blurred vision, dizziness and balance problems for years but had put it all down to the stress of having a busy job in the aerospace industry,” the 46-year-old explained. “Then I had what must have been one of my first MS attacks while out for a Christmas drink with colleagues in late 2004. I’d had just one drink and found myself unable to walk up the stairs. My left foot just wouldn’t move off the floor. It was terrifying and I knew there was something seriously wrong. I got checked out and that’s when the neurologist told me it was MS.”

The disease has had a serious impact on Iain’s life, reducing his ability to walk, causing him painful spasms and bladder problems and leaving him feeling fatigued.

Although his employers were very supportive, he took early retirement in 2009 as the stress of work was bringing on more relapses.

Iain says he’s faced a battle to access some of the MS medicines he needs.

It look almost two years after his diagnosis for him to receive a disease modifying treatment (DMT) and he’s had a similar battle to access other medicines since, including a year-long wait to get Gilenya - new, more effective tablet-based treatment.

“It feels like everything is a fight. At first I was told I wasn’t relapsing enough to meet the criteria, essentially that I wasn’t sick enough despite the fact my MS was getting worse and knocking me off my feet more and more during every relapse,” he said.

“Gilenya is the first tablet medicine for relapsing remitting MS. Not only is it more effective than injections but it could also have a huge impact on my quality of life because it means I won’t have horrible daily injections anymore. I have started Gilenya this month but I’m so disappointed that I’ve had to wait so long to get it. I’ve never wanted to be a drain on health service. I just want the most effective medicines to help me manage my MS for as long as possible. In reality early intervention keeps me from being a drain on the health service.”

Iain says the fight to get new medications “always seems to come down to cost.”

“My Neurologist, GP and the MS nurses are all excellent and I’m so grateful for all their hard work, but I feel like the system is failing MS patients. I feel like I’m constantly fighting for the MS medicines I need. It’s just not fair and very draining,” he added.